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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I went for a hand assessment today with the OT at Torbay Hospital. I was measured for swelling, strength and range of movement. The OT Nikki, is a really nice person and always treats me as an equal, and with respect. She used a little tool to measure how straight I could get my fingers and to what angle I could bend each joint. The results were quite typical for someone with RA. I have reduced grip strength, scoring 4 when the average healthy score is 10. I also have reduced range of movement in nearly all my finger and knuckle joints. There is crepitus in some finger joints, tendon swelling in my little and ring fingers and the ring fingers on both hands are bending upwards. I feel a little upset to have this objective measure of my limitations but I suppose it will help with monitoring my progress or decline in the long run. I feel quite weepy now though. I think half the time I am in a state of partial denial and then when I go for an appointment it makes me face up to having RA. Thank goodness the OT is such a nice person as this makes news like this a bit easier to digest. Do other people feel a bit weepy too after their appointments because the reality of their situation is brought home to them?
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Naomi - so sorry to hear that you're feeling weepy and low. It is always a shock when you get told the absolute facts and it takes a while for this to sink in. However, I am sure that you will adapt to make the most of yourself and work around any limitations. I know how annoying it is to have a weak grip, and several of my fingers lock straight when i try to make a fist, so nowadays I use gadgets to help open things and if i can't open a bottle or jar then I ask the nearest person to open it for me - I rationalise it to myself by saying that I've spent years helping others so now it's my turn to be on the receiving end!! On one occasion I even asked the guy at the checkout to open a screwtop bottle of wine for me - he probably thought I was a desperate alcoholic, but that just made me smile inside!! Hope you feel brighter tomorrow - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Naomi,
One thing that always gets me down is every time you go they find something else wrong with you! Pretty inevitable I suppose but I always think, "for goodness sake, not something else" The other thing that gets to me is having to be honest about how thing's are. I spend my life saying to people that I'm fine, playing things down, putting on a brave face and making a joke of whatever isn't currently working properly. Then when you see the medics you have to tell them how it is and there's a big dose of reality which wallops you in the face! So, you're not the only one. What then gets me through is giving myself a bit of a slap and then shouting to myself "what you gonna do about it then"? Make a plan and then feel better. This can take some time though! Hope you're feeling a bit better today.
Take care
Sara
x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Naomi I understand your feelings completely and am sure they must be commonplace in anyone dealing with chronic disease. I think Sara has hit the nail on the head  though! We have the disease and have no option other than to act on it (harsh? But realistic!) Knowing the extent of damage does allow us to make plans for the future, and if necessary change medication accordingly if damage is ongoing. One of the things to bear in mind is that the limitations you are currently experiencing may be down to acute inflammation and its affect on the hands rather than long term damage. It would be unfortunate in these early stages of your disease if there is much long term damage. Remember to rest your hand joints whenever you can and particularly if there is active inflammation. I've never really got tearful over Rheumatoid; despite the damage it's done I have always fought back. Many of the problems it brings can be addressed through physical means and this brings a sense of control and being in charge of the disease. You are doing well Naomi, from the outset you have done so much to learn about the disease and its impact on you personally. This is so important in my view in taking charge and learning to live with it. Keep strong Naomi  Lyn xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Hi Naomi
I really do empathize with you Naomi, it's just so demoralising to be given negative news when you are trying to be so positive and think forward with your disease.
Like you, I will be feeling very weepy next week when they give me my x-ray results of my spine, but my motto is have a good cry, weep, get angry, then try to accept and move on.
My hands have taken a real hammering with this disease in 12 years despite all the drugs I have taken, I can't bend any of my fingers on the right hand but you do find ways to adapt. Everyone I have spoken to with R.A has this fighting spirit in them, this is so reflected in all the messages you read on the site. Whatever happens Naomi in the future you will survive it, you have a really good attitude towards your R.A, I always enjoy reading your posts.
Best wishes
Rebecca x
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thank you for your support everyone. In the end we have no choice other than to fight this wicked disease. We can't walk away, though I really wish I could. I have had some serious emotional wobbles over the last year. I don't think I'm very good at dealing with illness. I am having to develop strengths that I didn't know were possible in order to face up to RA and tackle it head on. I may have wobbles and fall down quite often.....but then I get up and fight again every time. It would be much harder without you guys....so thank you. Naomi, X
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi Sorry it's rubbish news for your poor hands.  Really, when you find out a new bits gone Wonky you go through a mini grieving process. I had a ultrasound of my handsdone as part of my followup appt in anti TNf clinic You might like to ask for similar? I just think information is powerand I like to know what I'm dealing with xx how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Hi,
I was wondering whether you have been given hand exercises. If you have I hope
you are still doing them regularly. If not ask for a exercise sheet from the physios.
There are all sorts of grips and stretching as well as walking the fingers towards the thumbs.
Take care Anne
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Naomi, Sorry to hear even more disheartening news. I have been diagnosed with our common disease now for nearly five years and had it for at least a year or more before that. Just like you, and many others, I expect, I continually struggle to cope with the changes that have happened to my way of life, and my body during that time. Just when we feel a bit more possitive it knocks us back again and again. It is so difficult every day to dig into those inner resourses and not let this silly disease become who we are.
A very understanding family is brill, and of course all the fantastic friends on here who really understand what it is all about are a godsend. I often think that the intense suffering, both emotional and physical must be visible to all, but of course it is not!!
Anyway mustn't get too maudling. Think possitive!! Will take a short walk out with my little furry friend, he always cheers me up, and nothing like a bit of fresh air to blow the cobwebs away.
Best wishes, Zena x.
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Rank: Advanced Member
Groups: Registered
Joined: 10/13/2011
Posts: 62
Location: Cirencester
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Sorry to hear things aren't going well - you always sound so positive on your posts
Perhaps you need to push for more/different treatment if your hands are getting worse.
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